Pippa's Journey with a Brain Tumour

The Challenge Fair was very different this year in comparison to what it was last year. The fair itself was still amazing – an array of rides, food, drinks, activities and Christmas presents for all the children. A very generous event from the team at Challenge. The sun was shining again and we took Claudia and Will along with us as our “family”. The difference this year was that Pippa could not run around like all the other children from one ride to the next; her smile only appeared a couple of times rather than being permanently planted on her face. James and Patrick were her pillars – by her side all the time.

Today Pippa’s oncologist feels she has plateaued and is perhaps stable – I’ll take that. Tomorrow instead of having an extra day of treatment he has told her she can go on whichever rides she likes at the Challenge Christmas Party! When I queried him about the head spining, jolting rides she will undoubtably seek out he shrugged his shoulders and said, “Who cares, maybe she shouldn’t but let’s just let her have fun.” He’s right, she’s been to the edge, a fun ride can’t do any worse than that. Pippa’s in bed nice and early and is looking forward to it. The poor little darling is so tired each day.

Today we had invited Pippa’s teacher to come and see her so she could show her around the Royal Children’s Hospital. This was something that Pippa herself had suggested a while ago but it never eventuated as our treatment and visits ended before we could arrange it. Thus, we decided to do it this time around. In hindsight it would have been a wonderful visit to do much earlier in our journey. As Pippa said, “then she knows where I am and what I’m doing when I’m away from school”.

Yesterday I needed to fill another script of steroids for Pippa which I did whilst she was on the radiation table at Peter Mac. When I was called to collect the script the hospital pharmacist asked to speak with me. He was quite concerned about the high dose of medication and knew it had been for a prolonged time based on how recently I had filled the previous script. He was checking that I understood how to take the medication, that I was counteracting some of the side affects with other medication and wanted to know how long I had been on that high a dose and if I knew how much longer it would be required. He was being very thorough but also very kind. I reassured him that I understood everything and that yes, we were having occasional issues but I was essentially managing everything as best I could with appropriate medications. He was comfortable with that. It was not until the end of our discussion when I corrected him that my script was not for me but my rather petite 10 year old daughter. He was speechless. We shared a look of sadness and I quietly left clutching on tightly to the bottle in my hand with tears welling up in my eyes.

Pippa has been on this dose of steroids for 2 weeks now. It is almost twice as much as the highest dose she was on last year and that was only for (I think from memory) about 5-7 days at the peak of being on steroids for approximately 5-6weeks. Dexamethasone reduces the swelling around the tumour so the radiation can have a chance at working. Neither of her oncologists is ready to risk taking her down from this dose just yet.

Today we entered the 8th day of reirradiation. I no longer profess to evaluate whether or not it has started to work as last Thursday I thought that her walking looked better but then on Friday I was hit with a tonne of bricks. Pippa wakes in the morning, smiles and looks at me with her big, beautiful eyes……that is enough. That in itself means we have another day and another day means time for the treatment to work.

We have a lovely, tranquil and peaceful apartment in which to spend each day; perfect for just existing. I’m sure it’s the relaxing view both day and night that has contributed to me finally heeding Pippa’s oncologist’s advice of, “try not to worry about things that are out of your control.” For the past 17 months it’s been easier said than done but right now I know I am doing precisely everything I can and if I didn’t try this I would regret it forever. The hardest thing is that Pippa had to get to the very edge to let the treatment try and work. Right now, there is simply nothing more I can do.

Pippa rests, sleeps, does drawings and plays games. Monopoly though, has been sent home because no one else ever wins! Instead, we have kept Tony’s beloved vintage (we’d better not call it antique) Chinese Checkers Board and of course we still have all of our favourite “Julie” games including Greed and Rat-a-tat-Cat. Sunday we went for a “roll” in the sunshine along the waterfront market – it was lovely but tiring. The warm weekend also saw Pippa have a brief swim in the pool helping exercise her leg muscles affected by both the tumour and the steroids. On Monday I was wondering how on earth I was going to wash Pippa’s hair – balancing slippery shampoo, conditioner and Pippa all at once was going to be challenging. My solution saw us stop off at the hairdressing college on the way home from Peter Mac. She was well and truly ready for a sleep when we got home but it was certainly the perfect answer!

We are just keeping everything very low key; going along day by day. Actually, as Pippa corrected me yesterday, “this is how we go mum – seconds, minutes, hours, days, weeks and then months.” Of course she is correct. Last night she had hours of belly pain from her steroids. Once we fixed that she had hours of sleep, today she’s had minutes of radiation therapy, minutes of fun playing games waiting and then hours of sleep again. Minute by minute, day by day; all to get more precious time for one precious girl.

Over the past 17 months I have written some really difficult words so I can record, remember and communicate this journey James, Patrick and I have taken with Pippa. Somehow though, these last two posts have been the hardest for me to write. I am not writing pragmatically or clinically or even emotionally; I am simply numb watching my gorgeous Pippa struggle every minute of every day and I am exhausted hoping that the massive doses of steroids that she has been on for the past week can just keep the tumor at bay until the radiation therapy kicks into action. To me, these words are just mushed up babble on a page making no sense at all but we have virtually disappeared again and this is the easiest way for me to communicate.

Last Friday we returned from Noosa straight into a planning day and Tuesday was the day we were to begin reirrradiating Pippa’s tumour. I know we have been told there is nothing more that can be done for Pippa and 12 months ago I was told Pippa could not have more radiation but I had researched this as an option to improve Pippa’s current symptoms, delay her disease progression and prolong her life. This is not buying a cure, but buying time and we are hoping it will work. Too early or too late and the treatment doesn’t have a chance to work (albeit temporarily) against the tumour.

Pippa needed to tick many boxes to be considered for reirradiation and then we had to wait. I have been silently watching and waiting for weeks. The timing needed to be so precise and if it wasn’t there was no point attempting it. Both Pippa’s oncologists supported me and agreed she was a good candidate for the treatment but I was put through a lot of questioning from them to make sure I understood my (our – because I had discussed it with James, Patrick and Pippa) decision. How could we not try to buy our precious Pippa extra time here with us?

In addition to the time waiting for the tumour to become aggressive enough to be attacked, radiation therapy itself needs time to start to work. Firstly we had to make it from Friday to Tuesday. Pippa declined even more rapidly on Saturday and Tuesday seemed like a lifetime away. Tonight, after a 5th treatment this week we are waiting again. This wait is proving even more painful. James and Patrick have joined us in Melbourne earlier than planned. We can’t be apart just now. It’s the battle of tumour vs steroids and reirrradiation. Pippa needs the radiation to hurry up and join the fight though – its’ currently taking its time stepping up to the plate with a rather nonchalant attitude. Her little body is fatigued; walking, talking, eating and breathing exhausts her. She is on such high doses of steroids that they too are taking a toll on her – making her leg muscles ache and sometimes her stomach cramp.

Even with all this going on inside her body she is still our amazing Pippa – not one complaint and just the right amount of cheekiness.

One thing that put a big smile on our faces today was hearing Pippa’s CD for the first time. It’s strange hearing yourself but James, Patrick and I were all very impressed and I think a pretty good indication of how Pippa felt was that she sang along to her own voice and when it finished she said, “there’s two more songs I want to record”. I am very thankful for the opportunity that Pippa had to do this recording before we left for Paris. I can hear in some of the songs the strain the tumour was putting on her voice and breathing even then, but it is beautiful and another memory to have for each of us including Pippa. I wouldn’t change anything I have done in the way I have dealt with this and if given more time we will create more memories and have more fun. Even though Pippa can’t do much at the moment, just being with her every minute is fun and memorable. She is the most beautiful and wonderful person to have in our lives. She is the very centre of our little family and we love her so very much.

We went to Noosa for a week. Technically it was to have a lovely little break with some friends but in reality I knew it was to watch the subtle decline of Pippa. Things started to happen that affected Pippa’s speech, her walking and the movement in both her eyes. She had already lost the ability to swallow liquids and had been on thickened drinks for a few days. We were there to spend some time focusing just on her and being just with her and the boys. Our friends we holiday with are the type that can just be in the background and let that happen and I thank them for that. The beach and sand were too difficult making her unstable but the pool with its weightlessness was a lovely respite for Pippa even though just 10 minutes did wear her out. Pippa was watched over and protected by her beautiful brothers. Such special boys. Even though she was tired she was looked up to and adored as always by Kate and she had a surprise visit from Claudia

Teaching Kate to jump in the pool

Love you Claudia

Pippa did visit the beach once. She quietly went to the water’s edge and wrote on the sand……..P&M 4 Ever.

Silly me asked her who M was – Mummy……..

We returned from Noosa to the Children’s Hospital and Peter Mac for scans and planning. We’re not taking this lying down just yet.

The Warrnambool Seaside Basketball Tournament was held on the weekend. Some friends had organised a Milkshake and Pancake stand to help raise money to send their team to the Nationals in Canberra…….. A little girl decided she would help sell milkshakes and pancakes and sat tirelessly for hours on Saturday doing a very good job of taking orders and money.

Pippa and Andy

Eventually her mum suggested she have a break and sit down for a bit and watch a basketball game. She was torn, but she agreed only on the condition that she could return to her post. Off she went to watch another team of friends – the under 16 boys teams. On returning to her post the selling area seemed full of the big u18s boys taking their turn at duty. No, where there is a will there is a way and there was still room for the little girl to get in there and help! Which of course leaded to lots of cheeky fun with the big boys.

Anyone for a Milkshake?

When it was time for their next game, one of the big boys suggested that the little girl should come with them and sit on the bench. That was the start of an incredible bond………

Walk with me Pippa

The little girl sat on the big boys bench for every game. On the second day of the tournament, the little girl didn’t sell any milkshakes, she spent every minute being part of the team on and off the court. She sat on the bench and received her quota of pats on the back and rubs on the head as the big boys were subbed on and off the bench alongside her. She handed out the lollies in the breaks. In the huddles if she found herself on the outside a big arm would come from somewhere and pull the little girl into the centre. She put her little hand in with their big ones for the motivational chant before they would run onto court. In between matches she just ‘hung’ with the big boys and had fun.

Sup Josh?

Marli

Pippa and Xav

Lunch Break

Hanging with the Big Boys

Listening to the Coach

In the huddle

Handing out the Lollies

You hold the balls Eliza and I’ll poke you

The big boys won their under 18s grand final and the little girl was thanked for the part she played in their team and received her trophy. The little girl is very proud of her trophy and it goes everywhere with her.

Good Job Pippa

Two Number 14s

Even on the step she’s still the little girl

The u18s Boys Seahawks Team

The mums and dads were proud of their big boys and the way they included the little girl with such kindness and warmth. The little girl’s mum’s heart was touched and she is very grateful to the big boys knowing that they made a beautiful and selfless impact on the little girl. It goes to show that you don’t have to be a famous sports person to be looked up to. On the weekend, The Warrnambool Seahawks had an under 18s team of heroes and the little girl spent the weekend admiring the big boys and being part of their basketball team. She was thrilled.